As parents of special needs kids, we have felt the weight of being misunderstood. In this episode, Carrie shares her experience with people who have made assumptions about us or our children and how it affects us as parents. She explains three things she wishes people understood about her parenting journey and three ways to handle ourselves when we have been misunderstood. Experiencing this life can be lonely, and this episode will give you some practical ways to manage the complex feelings that come.
Ep.158: February 13, 2024
Key Moments:
[0:52} A hospital experience I’ll never forget
[5:08] Our grief is just as heavy as losing someone
[8:22] Is this assumption worth addressing?
[9:58] Assume the best intent, ask questions before assuming
[11:25] Our reaction may not be about the offender
Resources:
Scriptures mentioned: Exodus 14:14; Isaiah 53
No Other King
If you enjoyed the show:
As parents of special needs kids, we have felt the weight of being misunderstood. In this episode, Carrie shares her experience with people who have made assumptions about us or our children and how it affects us as parents. She explains three things she wishes people understood about her parenting journey and three ways to handle ourselves when we have been misunderstood. Experiencing this life can be lonely, and this episode will give you some practical ways to manage the complex feelings that come.
Ep.158: February 13, 2024
Key Moments:
[0:52} A hospital experience I’ll never forget
[5:08] Our grief is just as heavy as losing someone
[8:22] Is this assumption worth addressing?
[9:58] Assume the best intent, ask questions before assuming
[11:25] Our reaction may not be about the offender
Resources:
Scriptures mentioned: Exodus 14:14; Isaiah 53
No Other King
If you enjoyed the show:
Hello there, it's Carrie M. Holt today, and you're listening to episode 158. This episode is entitled: Making Assumptions. We're covering the topic this month about when you're misunderstood or what others often don't understand about being a special needs parent.
When my son was around two and a half, we had a medical emergency that landed us taking an ambulance to the hospital. We ended up in critical care in the emergency department, and then he had surgery that evening to fix an issue that he was having. The surgeon had told me before the surgery that if it lasted this much time, it meant everything was okay, but if it was longer than that, it probably meant there was more wrong; it was more invasive, more critical. So it's late in the evening. The minimum timeframe that the doctor had said would be normal had long passed, and I was afraid. The hospital was eerily quiet, and the normal sunny disposition of Kim, the OR waiting room attendant, was missing. She wasn't there; she had long since gone home.
Finally, I got word through a telephone call in the room that he had been immediately transported to the pediatric intensive care unit instead of post-anesthesia care, which is what usually happens after surgery. At this point in our journey, we had already been through many surgeries with our son, and normally, they would let us go back into the PACU or the post-anesthesia care unit to see him.
Then we'd walk up to the floor with him. So they give me a call and say, hey, just head right up to the ICU. He's up there, and they can give you the updates when you get up to the floor.
If your child is ever been in the hospital, I'm sure you're familiar with the security, the stickers you have to wear, or badges. I was still wearing a temporary sticker from being in the ER all day, as my son hadn't officially been admitted yet. When I headed up past the security desk, they stopped me and said, “Hey, you need to go to admitting, get your parent badge.” It's more of a long-term identification for when your child's in the hospital.
I had explained to them what had happened, how my day had gone, and asked if I could come back down in a little while that I really wanted to see my son. They were really understanding. It's a sure, just come back down when you can. So I headed up, and immediately I walked into the room, and I saw my son with an NG tube in his nose. Mind you, he already has a G tube in his stomach. So he has two tubes. He's got bandages the entire length of his abdomen. He has staples. The first thing out of my son's mouth is he's begging me for a drink of water. If your child has ever had surgery or any type of abdominal surgery, you know that it takes hours, sometimes even days, before they will let your child drink anything or eat anything. As soon as his nurse saw me, instead of introducing herself or giving me an update, she accusingly turns around and says, “You need to go downstairs and get a parent badge.”
I don't know if their floor manager had been preaching to the nurses about parent identification or what her deal was, but I was mad, and I also wanted to cry. My day had been horrible, traumatic, super stressful. I already knew about the parent badge, goodness gracious. All she had to do was just ask a question, and I would have told her I had already walked past security. But that night ended up being one of the worst nights I've ever had in our journey of 60 surgeries in the hospital. Her nursing care was less than stellar, and I didn't trust her. A million things went wrong. Honestly, I felt like she was just doing her job. She wasn't actually caring for my son.
What is it about being misunderstood that causes our hackles to rise and the mama bear to take over? We want to fight, defend, and sometimes even fight back. How often have we made assumptions or been on the receiving end of assumptions about our kids? Probably more times than we can count. I will say I am noticing small perspective changes in the world around the stigmas about children with disabilities, but there are still many prejudices, incorrect preconceived ideas, and honestly outright lies that people believe about children with special needs, mental, physical, learning, the whole category of all of that.
If you had to tell someone the top three things that you wish others understood about being a mom to a child with a physical, mental, or behavioral disability? What would it be? In today's podcast, I want to talk about the three things I wish people understood about being a parent to a child in a wheelchair, three ways to handle being misunderstood, and then one thing we should always remember when we're in situations when a misunderstanding happens.
First of all, I wish people understood that my grief is just as heavy as losing someone. and it doesn't go away. This is something I wish I had understood at the beginning of my journey, but the grief is always there and I'm always living somewhere in the cycle. It still hurts: the disappointment, the anniversary dates, the diagnosis dates, the surgery anniversaries.
Sometimes there's the anticipatory grief when we anticipate what will happen in the next surgery or doctor's appointment, and we grieve and feel sad because of it. We anticipate this grief because we fear for the future of our children. I feel like sometimes people just don't get that. Yes, I'm still living in a grieving cycle and it's something that I have to deal with daily. We all deal with this daily when our kids don't reach milestones that other kids are reaching, or we fear for our children's future.
The second thing I wish people understood about being a special needs mom is just because my son doesn't walk doesn't mean he's younger or that he's less than. I cannot tell you how often I have watched others treat our son like he's a little child. He's 17, just because he sits down doesn't need to be patted on the head. How often have I heard the phrase, “as long as the baby's healthy.” I think this goes right along with the same idea because it's an assumption that health gives value. I'm not disputing that health is important. I'm the first advocate for exercise and a good diet. I am thankful I have three neurotypical kids, but health isn't the gold standard for having a baby. Life is, life and God. I would really love it if other people would treat my son as the person he is first and the disability second. I'm sure many of you can relate to that.
The third thing that I wish people understood about being a special needs mom is that it's lonely and it means being left behind. This point kind of goes along with the first point of grief, but when all of your friends who have kids who are moving on to get their driver's license, applying for college and your child is not, it's heavy. Sometimes all we're doing is our best to keep our child alive or at some level of health. You're always putting out a fire, an infection here, a hospital stay there. It's normal as a parent, as our kids age, to expect them to need less care, to be more independent. With some kids with disabilities, that does happen. But frankly, most of us are still in some early stages of caregiving, and we're gonna be caregiving for our kids for the rest of their lives and ours. This means we're lonely. We're constantly on guard, looking for medical issues, calling doctors, and as I said earlier, putting out fires. If one day you ask me how I am and the tears come, that's why. The life of a special needs parent is grinding and hard, and it's one that's very lonely.
Now let's switch gears though and talk about what do we do when we are misunderstood. We have that confrontation in the parking lot or a doctor who misunderstands. First of all, I think it's really important for us to evaluate whether it's worth it to address the misunderstanding. When I look at Jesus in the New Testament, He didn't always address the jeers and confrontations about who he was and why he was there. But he did seem to address the honest questions of those who were truly seeking answers. I like that guideline. I think in this, we also have to account for the contact that person is going to have with our kids.
If it's a teacher or a grandparent, for instance, a volunteer at church, we may need to address the misunderstanding. When I think about confrontation, it is not my favorite. I like to talk big about what I would say, but in a one-on-one situation, I'm a nervous shaking mess. I love the scripture in Exodus 14. The Israelites are finally leaving Egypt from the bondage and slavery that they've been in, but they're stuck between the Egyptians following them and the Red Sea. They start to complain that Moses had taken them from Egypt just to die. Moses tells them in Exodus 14:14, “For the Egyptians whom you see today, you shall never see again. The Lord will fight for you, and you have only to be silent."
We have to evaluate whether the misunderstanding that's happening with our children is worth it to be addressed or not. There are times when it is best to be silent and let God do the fighting for us. Remember, he cares about every detail. Ask him for wisdom to know when to be silent, when to speak up, and sometimes maybe when to fight just a little.
The second thing I've learned about how to handle misunderstandings with others is ask a question before making an assumption. It goes back to the first story that I opened the podcast with. It can be easy to assume that the world is out to get us, misunderstand us, or even treat our children poorly. We honestly, sometimes, 17 years in the journey, we walk around this life jaded because we've seen the really awful side of people. But, it also doesn't give us a posture of grace. That same person who maybe is parking wrong in the parking lot and taking our space or whatever it might be where you feel misunderstood could also be dealing with something really hard. If we always have this posture of fight first and ask questions later, we're gonna live our life close fisted. We should always assume best intent. And honestly, I'm talking to myself when I say this because it's so hard, I always assume the worst about other people, but I'm learning to assume the best intent or at the very least, maybe they just don't know. Maybe, they just really don't get it. Tthey don't have the right words to ask the question in the right way that's not gonna ruffle our feathers, but let's give them grace. Maybe we ask more questions so we can clarify what they're actually saying to us.
I think it's also really important to ask ourselves these questions. Why does this bother me so much? What's the real underlying reason? Sometimes when we react to certain situations, it's not really about our kids at all, it's about us. The situation we're encountering is bringing us shame. We feel guilt over our mothering, or maybe we feel helpless because we don't have the power to protect our kids from the cruelty of the world. So remember when you are misunderstood these three things.
First of all, evaluate whether it's worth it to address it in the moment, ask a question before making an assumption, and lastly, ask yourself that question, what's really going on here? Why does this bother me so much? Get to the root of that.
Lastly, the most important thing I want you to hear in this episode today is first of all, you are not alone. Not only is there me, Amy and Sara, there are other special needs parents out there, who feel the same way that you do.
Lastly, and most importantly, Jesus knows. He knows what it's like to be rejected, despised, oppressed, falsely accused, mocked, and afflicted. Jesus understands. I don't have time to read this whole passage here, but I would encourage you to read Isaiah 53, especially when you feel like your child is the only one in the world who doesn't have any friends. If anyone knows what it's like to experience injustice, it's Jesus. And the crazy thing is, he chose it. He chose it for you and for me. He chose it because he desired an intimate relationship with us, and it could only come through his death and resurrection. He chose for us to have redemption and for us not to wear any of this shame. The assumption that he makes about you is that He loves you. The hairs of your head are numbered. Your days have been designed before the earth came into being, and Jesus thinks you're worth dying for.
Lastly, I want to close with the words from a worship song that I dearly love called No Other King by North Point Worship, because I think it just drives this point home about how much Jesus loves us, and how much he understands how we feel.
No other king would kneel to wash my feet, prepare a table for his enemies, lay down his glory for the least of these. No other king would touch a leper's skin, open his arms to let the outcast in, respond with mercy in the face of sin.
Jesus, no one is like you. Jesus, there is no one beside you. Of this I am convinced no greater love exists. Forever, all my hope is in no other king.
No other king would stand the mockery, be led to slaughter and refuse to speak. Take up a cross and choose to die with thieves. Take up a cross and give his life for me.
No other king has risen from the dead, knocked down the gates of hell with just one breath. No other king will reign until the end. This is Jesus.
Don't forget, Jesus is your King. No greater love exists for you and he is your defender. Have a wonderful day.